Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Saturday, December 30, 2006

Today, riffling through a pile of accumulated mail, I come upon a terse letter from someone who works for the Board of Pensions of the Presbyterian Church (U.S.A.). It reads as follows:

"I am in receipt of your application for Optional Death Benefits. I regret to inform you that you do not meet the medical underwriting requirements and are, therefore, ineligible for participation in the program at this time. This decision was based on the information provided on your medical statement."

So, I've been rejected for supplementary term life insurance. I can't say I'm terribly surprised, but it is disappointing. I'd been hopeful that my in-remission status, combined with the power of the relatively healthy group that are my colleagues in ministry, could put me over the top.

Evidently, it was not to be. The medical underwriters took one look at the words "Non-Hodgkin Lymphoma" on my application, and concluded they don't like the odds of my living another ten or fifteen years.

I suppose that makes me, officially, a statistic.

Usually, when we hear that someone has "become a statistic," it means they've already bought the farm. The car's wrapped around the telephone pole, upping the county's annual death-by-auto total by one. It's an oddly dehumanizing negation of a life, that expression.

The teenage driver laid out in the casket in the funeral home is obviously so much more than a statistic. The teary-eyed family members – eager to reminisce, as though spinning tales would bring their loved one back to life – know that very well. Yet, to some anonymous actuary running his or her finger down a long column of numbers, that makes little difference. Do the numbers breathe? Do they laugh? Do they cry?

"The people who walked in darkness have seen a great light..." (Isaiah 9:2) Those words have always given me a thrill on Christmas Eve.. There's something about that primal image of light in the midst of darkness that emboldens the human soul.

These are the words I chose, this year, as the basis of my Christmas Eve sermon. It's a different crowd I preach to, on Christmas Eve. Most preachers find this to be true. A good many of our Sunday-morning regulars are on the road, visiting friends and family for the holidays. Many of the others who show up are the "C and E" people (that's "Christmas and Easter," for the uninitiated). I've been at this church long enough, now – sixteen years – that I know a great many of them, by sight if not by name.

As I was thinking about what to preach to this very different congregation, I realized many of my listeners would not be up on the details of my medical situation. Some of them might not know I'm in remission. So, I decided to include a brief medical update in the early part of my sermon. This is what I said:

"If you'll allow me a few moments to speak personally, it's a special joy for me to be here, this Christmas – because last year, at this time, I wasn't entirely sure I would be. Just over a year ago, I learned of my cancer diagnosis – Non-Hodgkin Lymphoma. By the time Christmas Eve rolled around, I'd learned just enough about the disease to know I had a tough road ahead. Chemotherapy was in my future, and I'd heard all the horror stories, and then some.

Most cancer survivors will tell you that the time right after diagnosis is the darkest time. One year ago, I was right in the midst of all that, trying to bring a Christmas Eve message of light and peace and joy. Last Christmas, if truth be told, I felt more like those people of whom the prophet Isaiah speaks: the ones who walk in darkness.

This Christmas, praise God, my treatments are all behind me. I'm still in remission, with every hope that good health will continue for a very long time. I've learned a few things, since last Christmas, about faith – the same sort of things Paul had learned, I suppose, by the time he wrote these words to his friends at Philippi:

‘I have learned to be content with whatever I have. I know what it is to have little, and I know what it is to have plenty. In any and all circumstances I have learned the secret of being well-fed and of going hungry, of having plenty and of being in need. I can do all things through him who strengthens me.' [Philippians 4:11b-13]

‘The people who walked in darkness have seen a great light.' I wonder if you or I ever truly understand what a marvel light is. You know, not even the scientists have figured it out. They've sought to understand light, at its most basic level, and they've come up empty. One of the greatest debates in twentieth-century physics was whether light is, fundamentally, a particle or a wave. Then, the strange new field of quantum mechanics opened up, and word finally trickled back from those investigations: light is both – and neither. There's one thing about light I do know: you've got to be in darkness, yourself, before you fully appreciate it. You can't do a whole lot of stargazing under the streetlights of a shopping-mall parking lot."

Lots of people – including a great many in our Christmas Eve crowd – have been doing just that, in recent weeks. They've tried to snatch a few moments, amidst the holiday madness, to glimpse a star or two. Yet, in this consumer culture, the places where most of us spend our nights simply aren't dark enough to catch sight of the one, true star.

The personal darkness that comes with a cancer diagnosis does provide a certain clarity of spiritual vision. I wouldn't wish the experience on anyone, of course, but it does offer that small side-benefit. The message I have for anyone else who's traveling the road of serious illness is this: Watch for the light. Truly, it is there.

Saturday, December 23, 2006

I read something interesting the other day – some eloquently-crafted reflections by Elissa Rubin, a television producer and friend of Leroy Sievers, the National Public Radio commentator who’s also keeping a blog about his experiences with cancer. Elissa composed this reflection after visiting a chemo-infusion facility at Johns Hopkins Hospital in Baltimore, while filming a special on cancer for the Discovery Channel. Leroy posted it in the December 20th installment of his blog, My Cancer:

“What struck me almost instantly was that no one really looked sick. People were in street clothes, flannel shirts and blue jeans, carrying purses and computers. There was a woman in a purple cashmere sweater, one man in an elegant business suit. No bathrobes, no hospital gowns. Aside from looking a little tired, no one looked like he belonged in a hospital. Or that their lives now hinge upon what happens in this room, or that each one now exists in a world of prognoses and time limits. None of that was evident. I felt like I was looking around the platform of a metro station, except for the surreal fact that everyone was hooked up to a machine, with chemotherapy running through their veins, killing the cells that are trying to kill them.

Then you look around and think about what it means to come here, every week, sometimes from hundreds of miles away, and sit plugged into a machine for six hours. You see a room of horribly interrupted lives – the job promotion that just couldn't be taken, the missed soccer games, term papers that would have to be turned in next semester, maybe next year. Marriages thrown into shock, children put in the upside-down position of having to worry about their parents. If anything, this should be a place of raw emotion on display – after all, everyone is in the same position and everyone knows what the person next to him is probably thinking and feeling. It should have been a room filled with anger, yelling, objects crashing against the wall – yet no one even looked particularly sad. This was a place of remarkable calm. Maybe because it was a place – the only place right now – that offered anyone any hope. People were here to fight their cancer, to get better, to keep on living. This was the place for the people who have that option – the so-called lucky ones. At least their doctors were able to offer a plan – one that explicitly said, ‘You do have a chance to beat this, to live longer.’ This was a room of science and medicine, bright lights, protocols and doctors. Finally, there was an opportunity to do something to a disease that had stripped you of all control.”

That experience of being stripped of control goes with the territory, for those who have cancer. So many aspects of life are put on hold, when the single most important thing you can do is to sit next to an IV pole and wait for the drip, drip, drip of those toxic compounds. When it’s all over, and that blessed word “remission” resounds through the corridors of the mind, is there a corresponding return of the feeling of being “in control”?

Only some of the time – at least, that’s been my experience. I seem to alternate between taking up the tasks of life with enthusiasm and waiting for the other shoe to drop. I’m living into this experience of survivorship one day at a time.

Being a survivor isn’t as easy as it may seem, to those who haven’t been through a life-threatening experience. One may imagine – from the outside, looking in – that, once the all-clear is sounded, everything simply reverts to the way it was, pre-cancer. Not so. There’s a new appreciation for what’s important in life – and a corresponding impatience with everything that isn’t. It’s hard to make long-range plans. Like nearsighted people who have lost their glasses, we cancer survivors can only see so far. We live in the present, more than we used to. In the back of our minds is a low-level, but persistent anxiety, that bobs up to the surface of our minds, unbidden: What if it comes back?

In such moments, there’s still that worrisome feeling of loss of control. We no longer see ourselves as captains of our own destiny (as though we ever were).

A ministerial colleague shared this prayer, a couple of years back. I believe she said it’s from a book called Prayers in Celebration of the Turning Year, by Edward Tyler:

Since we cannot make the journey backward into innocence,help us to go forward into wisdom.Since we cannot begin again from the beginning,help us to go faithfully on from here.Since we cannot turn ourselves by our own willing,will you turn us, Great God, to yourself.

Friday, December 22, 2006

Well, it took me a while to hang those Christmas lights. I’ve been having a little difficulty staying on task, these days. But it got done, eventually – just an hour or so before our church youth group arrived for their annual, post-caroling Christmas party.

We finally did get our Christmas tree, too – again, just long enough before the carolers arrived to get the ornaments hung. The local Christmas tree lots were out of the good stuff, by the time we got there, so we drove the extra distance to a tree farm. We happened upon the right candidate just before it got too dark to see – a huge white pine (a kind we’ve never had before). It fills up the living room rather nicely – and, being recently cut, it’s not likely to lose its needles any time soon.

These days before Christmas this year are busy, and full. I can’t help thinking back, though, to last year, when Christmas was an altogether different sort of holiday for us.

My cancer diagnosis was only a couple of weeks old. I can remember numbly going through the holiday motions – getting a tree, decorating it, hosting the annual Youth Connection party – but I honestly can’t recall what I was thinking, through most of that time. I was a jumble of emotions, having just “come out” to the family and the congregation as a cancer patient. I can remember wondering, glumly, if that would be my last Christmas – maudlin, maudlin! – though those are sort of thoughts that do bubble up, when the diagnosis is still new.

This year is entirely different. The little family rituals we go through, in these pre-Christmas days, are comforting rather than disturbing. Last year, I thought I might be dying. This year, I know I’m living with cancer.

Monday, December 11, 2006

Yesterday, I accompanied a group of church members to see the new film, The Nativity Story. I'd heard good things about this fresh retelling of a very old and beloved story, and I wasn't disappointed.

Unexpectedly, I found myself in tears at a few points: when Mary and her cousin, Elizabeth, recognize the wonder of two very special babies growing within them; when Joseph agrees to stand by his betrothed, despite the scandal of her seemingly illicit pregnancy; and, of course, at the birth itself. I don't usually cry in movies, but this one had me blubbering like a fool. (Well, maybe not blubbering, but as close to it as I typically get.)

Everything I've been taught in seminary about Bible study says this is not how to approach these ancient texts. Matthew's and Luke's nativity stories should not be harmonized into one, say the biblical-studies professors. These are two completely separate accounts, that by all rights ought to stand on their own. Matthew tells of wise men traveling from the east, and Luke of shepherds and angels. Matthew's more interested in Joseph's role, and Luke in Mary's. There's nothing in the Bible to justify the conventional Christmas-card tableau of shepherds and wise men all showing up at the same time, gazing in wonder at the babe in the manger – as a beaming star directs the world's attention to the scene, like some first-century shopping-mall spotlight (I wonder how Herod's soldiers could have missed that)?

But that's what this film portrays. It's the iconic Christmas image, a celluloid version of the familiar Christmas creche, beautifully and sensitively re-created. I'm surprised by how powerfully these images still speak to me, even after years of objective, academic study.

I've been paging through a book a friend sent me, some months ago, that I've had on my to-do list for a while. Terri is a fellow pastor, and a cancer survivor. She found it helpful, during her own treatment.

In Cancer As a Turning Point, psychologist Lawrence LeShan suggests that some cancers could be linked to personal frustration, resulting from a feeling of being blocked in one's vocational life. LeShan's theory is that this blocked feeling suppresses the immune system, making us susceptible to illness. LeShan's book is filled with anecdotes of patients who decide to chase long-deferred dreams, taking the advice of folklorist Joseph Campbell to "follow your bliss," and who get better.

"A very large number of us grew up oriented toward what we should do rather than what we would enjoy doing; toward what we should want in our life rather than what we really want. Our actions are usually based on these ‘shoulds' rather than of the question of ‘what would fulfill me – what style of being, relating, creating would bring me to a life of zest?' This is the life, this life and the search for it, that mobilizes the immune system against cancer more than anything else we know today." - Lawrence LeShan, Cancer As a Turning Point (Plume, 1994), pp. 62-63.

I sent the people out from worship yesterday morning with the charge to "follow the star" in this Advent season. I wonder what that means for me, as a cancer survivor?

My cancer is changing me – making me less inhibited about crying in movies, more drawn to expressive, creative activities, less patient with routine, administrative grunt-work. I feel much more likely, at this stage of my life, to set out, magi-like, questing after some beaming star, than to sit behind a desk, making sure every "i" is dotted and every "t" crossed. This means I've been dropping some balls, administratively speaking – not compulsively cleaning up so many messes around the church, tolerating a bit more chaos than usual. (I've found that many of these low-level problems eventually resolve themselves without me.)

Maybe that's my spiritual growing edge, these days.

Today, I should be paying bills. I think I may hang Christmas lights, instead.

Saturday, December 09, 2006

This afternoon I drive over to Dr. Lerner’s office for a consultation. This is the first time Claire hasn’t accompanied me for one of these. We already know, from last Friday’s phone call, that there was nothing remarkable about my CT scan, so we expect the consultation to be rather perfunctory.

It is. Port flush... uneventful. Blood work... normal. Examination... a quick once-over, with the doctor feeling my neck, armpits and groin for lumps, then a quick listen to my heartbeat and breathing, through the stethoscope.

Then, we get down to business. Dr. Lerner opens my file, reads through the radiologist’s report, and examines a miniature version of my CT scan pictures. Everything looks good, he tells me. There’s no change in the appearance of the scar tissue, what remains of the abdominal mass.

He’d like to see me in another three months – this time, after another PET scan as well as a CT scan. I ask him how long he thinks it will be before we can begin spacing these tests out, at longer intervals. He says he’d like to keep the three-month testing interval in place until at least two years have elapsed.

Dr. Lerner reminds me that I was diagnosed with two different kinds of cancer cells: indolent and aggressive. With the aggressive cells, he explains, there is a two-year window, during which a high degree of vigilance is necessary. After two years, the chance of recurrence drops off significantly. As for the indolent cells, there will probably never be a time when we can completely let our guard down. Indolent lymphomas can persist below the radar for many years, before coming back.

Should that happen, he reminds me – should I discover a lump in the neck or armpit, for example, and a biopsy reveals it to be indolent lymphoma cells – the strategy could be simply to watch and wait for a while. Indolent lymphomas can be so slow-moving that “no action” is sometimes the best action. If an immediate response is called for, there would very likely be new treatments to choose from. The field of lymphoma treatment is changing so fast, Dr. Lerner points out, that even two years from now the treatment protocols could be completely different.

I ask him how long he’s planning to keep the implanted port in. As long as it’s not giving me any problem, he says, he’d like to leave it in “a while longer.”

Hmmm... the ravenous beasts may have been driven off, for now, but it seems my wilderness guide is still keeping the shotgun loaded.

So, I’m in a two-year window. Every three months – once each season – I’ll submit to one sort of scan or another. I’ll of course be hoping the results continue to be as unexciting as they are today.

“Stable is good,” the nurse said to me, as she took my temperature and blood pressure, before the doctor came in. Indeed it is.

Saturday, December 02, 2006

Today is the one-year anniversary of my diagnosis. One year ago today, Claire and I were sitting in one of Dr. Lerner's examining rooms, as we heard him share the biopsy results confirming that I have cancer.

The process of diagnosis took some considerable time, of course. For more than two months prior to that date, I knew a cancer diagnosis was possible, even likely. Yet, it was not until December 2 that we were sure. That very evening, we began informing family, friends and church members. Life has never been the same since.

The past twelve months have been quite a journey. I've traveled from shock, bewilderment and fear, through a self-imposed crash-course in human biology, through a whole season of chemotherapy treatments and more tests than I could number, to the place where I now – thankfully – find myself: in remission.

As I shared in yesterday's entry, the preliminary results of my latest CT Scan indicate that my remission is continuing. I'm thrilled with that news, of course, although the victory is not complete. It can never be complete. For, as I understand it, the type of cancer I have is not one that can ever be considered "cured." I'll be going for periodic scans for the rest of my life. Always, in the back of my mind, will be the nagging thought that it could – and very possibly will – return.

That's all right, though. I can live with that. (What choice do I have?)

One of the most influential books for my seminary student generation of the late 1970s and early 1980s (and for generations since) has been The Wounded Healer, by Roman Catholic pastoral theologian Henri J.M. Nouwen. Nouwen's main point, in this brief but profound reflection on ministry, is that authentic ministry begins at the point of our own personal woundedness. If we pastors are to serve in a truly Christlike way, we must get in touch with the ways we are wounded, ourselves – and, from that place of our own healing, reach out to others.

"The world breaks all of us. Some of us become strong at the broken places." Ernest Hemingway wrote those words (or words very much like them). Tragically, Hemingway – who died of a self-inflicted shotgun blast – never learned how to become strong at his own broken places. Still, It's a thought very much in line with Nouwen's model of ministry.

The ultimate model for that sort of ministry, of course, is Christ himself:

"Jesus came and stood among them and said, ‘Peace be with you.' Then he said to Thomas, ‘Put your finger here and see my hands. Reach out your hand and put it in my side. Do not doubt but believe.'"(John 20:26-27)

There are pitfalls to the "wounded healer" style of ministry, of course. I've known some colleagues, over the years, who have put a bit too much emphasis on their own woundedness, and not enough on their healing – filling sermons and pastoral conversations with "poor me" autobiographical detail. Some have sought to transform congregations into their own personal therapy groups (which, ultimately, helps neither them nor their people).

I hope that, in what I've written here over the past year or so, I've struck an appropriate balance. Cancer, in our culture, is too often shrouded in secrecy. I've felt the need to break that silence: to tell my own story, so others may know they're not alone. I've not written, primarily, as a pastor, but as a cancer survivor.

Am I celebrating my one-year anniversary? Not really. But you can be sure I'm noting it. It's a milestone, a mark of how far I've traveled. And the journey continues...

Yesterday I went for my six-month CT scan. Today, late in the afternoon, a voice-mail message arrives from someone in Dr. Lerner's office, notifying me that the doctor has received the radiologist's report. The report indicates, with typical medical understatement, that what's left of the mass in my abdomen is "stable."

This is good news. It means the tumor hasn't grown, since my last scan three months ago. The shrunken mass that remains is undoubtedly only harmless scar tissue.

Yesterday, as I lay on my back, half in and half out of the donut-hole of the CT-scanner, I was struck by how utterly remarkable this technology is. In the space of a couple of minutes, causing no pain or discomfort other than the prick of the needle that injects contrast fluid into my arm, the CT scanner peers into my insides. It "sees" parts of me that I, myself, have never seen. It reveals my inmost self (anatomically speaking).

Yet, there are deep mysteries even the CT scanner cannot discern – mysteries sung of by the ancient poet who wrote Psalm 139:

"O Lord, you have searched me and known me....

"O Lord, you have scanned me."

"For it was you who formed my inward parts;you knit me together in my mother's womb. I praise you, for I am fearfully and wonderfully made.Wonderful are your works;that I know very well.My frame was not hidden from you,when I was being made in secret,intricately woven in the depths of the earth. Your eyes beheld my unformed substance."

For this Hebrew sage, human gestation is a mystery. For who can discern the dark, mysterious processes that unfold within a mother's womb, as the human frame is slowly "knit together" over the course of many months? Only God can see into this shadowy place, the psalmist insists.

Today, physicians casually assume a Godlike vantage-point, as they peer into the wombs of expectant mothers with their ultrasound machines. In a similar way, using a different sort of machine, the radiologist has measured the dimensions of the scar tissue in my abdomen. Yet still there are parts of our inmost selves that stubbornly deflect the scientist's inquisitive eye:

"In your book were writtenall the days that were formed for me,when none of them as yet existed. How weighty to me are your thoughts, O God!How vast is the sum of them! I try to count them – they are more than the sand;I come to the end – I am still with you."

The doctors can videotape the beating heart of a fetus in utero, and they can scope out the size of a cancerous tumor – incomprehensible wonders, all, to the Hebrew mind – but still they cannot number "all the days that were formed for me," or for anyone else.

There are mysteries, yet, to this human life of ours. Day by day, in sickness or in health, each of us lives into such mysteries.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.